POS0338 TRANSITION COMPETENCE IN YOUNG PEOPLE WITH JUVENILE IDIOPATHIC ARTHRITIS HAS IMPROVED OVER TIME
Authors: K. Minden, M. Niewerth, S. Schalm, I. Foeldvari, J. P. Haas, G. Horneff, D. Windschall, T. Kallinich, F. Dressler, F. Weller-Heinemann, R. Berendes, T. Hospach, M. Hufnagel, M. Haller, S. Hansmann, J. Klotsche
Journal: Annals of the Rheumatic Diseases (2022)

Background In recent years, transition clinics have been set up at an increasing number of paediatric rheumatology sites in Germany to reduce identified deficits in the care of young people with rheumatic diseases 1 . In addition, the German Rheumatic Diseases League (Deutsche Rheuma-Liga, DRL), the largest self-help organisation in Germany, has been offering support services for young people in transition since 2016, including the interactive website www.mein-rheuma-wird-erwachsen.de . Objectives To assess the transition competence of young people with juvenile idiopathic arthritis (JIA) and their knowledge of self-help services. Methods Cross-sectional data of the National Paediatric Rheumatology Database (NPRD) from 2016 to 2020 were used to evaluate the health-related transition competence of young people with JIA aged ≥16 years. Health-related knowledge and health-care competence were assessed using a modified self-report instrument 2 on a 4-point Likert scale as part of routine documentation in the NPRD. Young people were also asked about their information behaviour and knowledge of new support services. Linear mixed models were used to determine whether health-related transition competence changed between 2016 and 2020, adjusted for disease duration. Results During the years 2016 to 2020, between 1.908 to 2.536 patients with JIA aged ≥16 years were annually recorded in the NPRD from 56 to 61 paediatric rheumatology sites. The annual patient collectives comprised 34-39% oligoarthritis, 23-26% RF-negative or RF-positive polyarthritis and 22-27% enthesitis-related arthritis cases. In the years from 2016 to 2020, about one-third of patients had inactive disease (cJADAS-10≤1) and about 60% had no functional limitations (CHAQ=0). Over the years, the proportions of patients who rated their disease knowledge and health care competence as “very well” increased significantly in most areas. Although over time, no increase in numbers of patients seeking information about their disease outside of rheumatology consultations were recorded (2016: 22.8%; 2020: 20.9%), awareness of the DRL’s new website for young people with rheumatic diseases increased from 7.7% in 2016 to 26.9% in 2020. Compared to those who were unaware of the new website, those who knew about the website were more likely to have received care in rheumatology settings that offer transition clinics and were more likely to be girls (75% vs 65%), to attend high school (51% vs 46%) and to be slightly older (17.6 vs 17.1 years). Conclusion The transition competence of young people with JIA seems to have improved over the last five years. During this time, more transition services were made available for young people with rheumatic diseases. However, most young people are not yet aware of these services. Moreover, the effectiveness of the different measures/interventions has yet to be evaluated. References [1]Luque Ramos A et al. Semin Arthritis Rheum 2017;47:269-75. [2]Herrmann-Garitz C et al. Gesundheitswesen 2017;79:491–6. Table 1. Health-related transition competence in JIA patients ≥16 years who participated in the NPRD 2016 2018 2020 p (difference over time) Patients N=2536 N=2068 N=1908 Disease duration, years 6.7±4.9 7.2±5.0 7.6±5.1 DMARDs at documentation, % 57 62 63 Disease-related knowledge (best answer “very well”), % N=1992 N=1598 N=1265 name of illness 35 42 42 0.001 names of medicines 54 59 56 0.717 what medicines are for 50 54 52 0.357 who to contact in case of health problems 59 65 65 0.015 influence of smoking, drugs, and alcohol on disease 49 55 54 0.002 how to make a doctor’s appointment 68 68 65 0.087 which doctors are responsible after leaving paediatric care 42 46 49 0.031 Health-care competence (best answer “most of the time”), % N=1784 N=1443 N=1143 inform my doctor of any unusual changes in my health 66 72 69 0.038 keep information about my illness 81 84 84 0.281 ask my own questions 51 56 55 0.016 answer the questions I am asked 69 73 74 0.014 take care of my health concerns and needs 66 71 69 0.041 attend the consultation alone 59 61 61 0.599 speak up for myself and say what I need 64 68 68 0.537 Acknowledgements The NPRD has been funded by the Federal Ministry of Health and the companies Abbvie, Chugai, ask, Novartis, Pfizer Disclosure of Interests Kirsten Minden Speakers bureau: Pfizer, Novartis, Consultant of: Pfizer, Novartis, Martina Niewerth: None declared, Susanne Schalm: None declared, Ivan Foeldvari: None declared, Johannes-Peter Haas: None declared, Gerd Horneff: None declared, Daniel Windschall Speakers bureau: Pfizer, Novartis, Abbvie, Medac, Sobi, Canon, Grant/research support from: Pfizer, Novartis, Abbvie, Medac, Sobi, Canon, Tilmann Kallinich: None declared, Frank Dressler: None declared, Frank Weller-Heinemann: None declared, Rainer Berendes: None declared, Toni Hospach Consultant of: SOBI, Novartis, Markus Hufnagel: None declared, Maria Haller: None declared, Sandra Hansmann: None declared, Jens Klotsche: None declared